Stage 4 Endo ( bowel )

[Sophia1988Sam]

Hi ladies, I am so glad I came across this forum as I have been searching for a while for some kind of realistic answers to the questions in my head rather than read health articles. I was diagnosed in June 2020 with endometriosis via CT ( two large masses covering both ovaries ) and internal scan but this was only verbal as was told I needed a laparoscopy to confirm. Because of the pandemic the NHS were not doing any elective surgeries so I had to wait. They put me on cerazette x2 per day to control the bleed as they said the Endo feeds of a bleed hence the debilitating pain. I got my 1st laparoscopy in March 2021 and they diagnosed stage 4 Endo and mentioned my bowel fused to the back of my womb? They did a dye test and said the dye went straight through so no blockages in my tubes but there were 8 small 8mm cysts covering both ovaries which were not removed but drained.

They then mentioned I would obviously need a larger surgery to remove the Endo completely and detach my bowel from my womb. Having said all this, I was alone and just awoken from the anesthesia so I couldn’t quite remember a lot. I’ve not had any luck contacting my NHS consultant or any luck with my doctors it seems like I’ve just been pushed aside and not even had a courtesy call or follow up.

I am still taking the cerazette but wondering if anyone here recommended I stop taking them now that the cysts have been removed and my tubes are clear to try conceive naturally? I just feel the pill is hindering my chances however low they may be due to the Endo? 🥺 I am 33 in October, 12 miscarriages not gone past first trimester and last one was in 2018. I stopped taking the pill then and that’s when the Endo reared it’s ugly head as the pill was masking it apparently?

Sorry for the very long post I am just a desperate, heartbroken woman with a story just like so many but without any answers xxx much love x

[Cailleach]

Sorry you have been through such an awful time.

I think the best way to go is via your GP, requesting information/ follow up from the Gynae department or a rereferral. It sounds like you need advice about your chances of now being able to conceive and carry a baby to term and whether the remaining endo is going to be a problem with that.

I have my own experience of being told something just after surgery that then never gets mentioned again. Whether they then have second thoughts, or what I don’t know! In your case it may just be the pressure on services at the moment.

It sounds like fertility is your main issue and if you focus on that with your GP for referral you might get further? I hope you can get some answers x

[Sophia1988Sam in reply to Cailleach]

Thank you so much for your response it’s helped a lot. I will speak with my GP tomorrow morning and try and get the ball rolling 🙏🏽 It’s the not knowing and the constant mind wandering that affects me the most because of being left in limbo x

[Roobs33]

Sorry you have been left without the information that you need and that you’ve been through such a hard time.

I was diagnosed last year with stage 4 and bowel stuck to womb in two places. I’ve been trying to conceive a second child for a couple of years and am now going down the ivf route. My consultant has said that they will treat the bowel endometriosis at a later date. So I’m unsure whether this will lower chances significantly or not of ivf working.

It’s so horrible waking up after an op and being alone and getting given awful news. It’s so hard to take in. I’m sorry that you haven’t been given a follow up. You should definitely chase this up. I recently got sent a copy of a letter from my consultant to my GP suspecting possible adenomyosis, which I have never been told in any appointment I’ve had.

Have you had fertility tests done through the NHS? As I would try and push for them as soon as you can. I’m so sorry that you have experienced so many losses. I would really get onto the GP to refer you to speak with a fertility specialist once they’ve done the initial tests and to get your follow up. I was on the mini pill for about 10 years and it completely masked all my symptoms.

Wishing you all the best xx

[Sophia1988Sam in reply to Roobs33]

Thank you so much for your kind words and care. It’s such an awful disease to have it just leaves you feeling so hopeless and worthless 😞 I hope you do get the chance for another child and your IVF is successful. 🙏🏽💖 I have spoken to my consultant this week only due to making a complaint via the NHS concerns team otherwise I think I would still be in the woods about everything. They are sending me to see the euro dynamics team regarding my bladder issues since the lap and also a scan with herself along with the top Endo bowel surgeon here to check to see if any endometriomas have grown back on my ovaries since being drained in march. Fertility clinic will be contacting me apparently and also IVF. She stated if the cysts are back, depending on the size and speed of their growth will depend on wether I come off the pill and try naturally for 6 months ( however this will mean as you know, severe pain and bleeds ) or wether we go down the IVF route as the dye test showed my tubes were clear so I hoping for some good news at the scan atleast 😊🙏🏽 She did say that all departments in every hospital are fighting for Theatre space atm so unfortunately our cases are usually pushed back as non urgent 😞🥺 xx